All about Guillain-Barré syndrome: The Webmaster's forum

I have often been asked about my case history, and the reason I involved myself in GBS and the creation of this website.

I have a relative with GBS/CIDP (the original diagnosis of Guillain-Barrré syndrome was later changed to CIDP). Being ill and traumatised by massive sensory symptoms, this relative was unable to assimilate more than a fraction of the little information being given him by the doctors.

Simultaneously, he went into denial and refused to give the family permission to talk to his health providers, and we could not obtain answers to our many questions. The situation was extremely frustrating for everybody involved. We had no idea whether he was dying or could be cured.

I have no medical training. But a university degree trained me in research. I began looking for answers, and soon discovered that there was absolutely no information available to Danish patients and their families, apart from hard-core medical litterature in other languages!

I vowed that this lack of information was something nobody else should have to go through. I began researching the medical litterature on GBS, and translated my findings into language easier for us mere mortals to understand! To spread the information, I created a website, starting off very modestly - 6 pages in Danish. Almost immediately, patients began visiting the website and calling and writing in for support, and the number of pages grew astronomically.

Barely half a year after the launch of my website, after repeated requests from non-Danes, I realised that the lack of information on GBS was a worldwide problem. I then offered an English section with information, case histories and readers comments. And other language versions are now available thanks to on-line translation engines, that while not perfect, enable me to serve the needs of a growing number of international visitors, drawn here from all over the globe by the high-quality information available.

Among these is a gentleman writing his Ph.D. in Turkey. He was inspired, among other things, by this website, and is working to help find out how one of the triggers that cause GBS can be reduced. Other visitors include patients and their families, health care providers, support groups, etc.

Using this website
To my delight, I found that people use this website in so many different ways. Apart from one-timers searching for information or inspiration, some patients visit regularly, to keep in touch with global happenings of relevance to Guillain-Barré sufferers.

Others print pages out, mark relevant passages and take the pages along when meeting their health professionals. Many find these meetings very stressful, and having the information along in black and white seems to be of great support while explaining their sometimes diffuse needs to a busy specialist. This is specially useful when the specialist appears unaware of certain symptoms or treatment strategies that have been described in the real-life case histories collection here.

Health care providers distribute prints to patients or colleagues. Some patients print and distribute pages from this website to their friends, acquaintances, work places, etc. This ensures an immediate increase in knowledge of the syndrome, and suggests several ways in which friends and family can help - and even more important, what won't help!

Many patients find it very therapeutic to write about their case histories and to share them with others here. This is inspirational to other patients and their families, and is, as described above, very informative to the health professionals who visit this site. If your story isn't here, please send it in!

From small beginnings ...
I was thrown into disseminating information on GBS quite casually, but have since discovered the need for reliable and exhaustive information. I feel privileged at being able to touch so many lives all over the world through this website and other initiatives launched single-handedly:

Five years after launching the website, I have gone a long way towards fulfilling my primary goals: improving the level of information Danish patients have access to, in their own language, as well as creating awareness of the syndrome.

I served as Vice President for the Swedish Support Group for GBS, as well as the Danish Liaison to the US Guillain-Barré Syndrome Foundation International (GBSFI). Being part of an international network of support organisations, I could network with these support organisations. We are able to draw on each other's experience and specialist knowledge, and meet the needs of patients and health providers.

I founded the Guillain-Barré support group of Denmark, where I served on the board for a while. I have been named honorary member for life for my efforts. Thank you, GBS-Dk! Other efforts included helping establish a support network in Denmark. Patients and their families can contact members for support and information, and hospital visits can be arranged.
Setting up the first nationwide GBS rally, held in 2002, was fun - see the report here . This should become an annual or even semiannual event at which patients and health providers meet, to exchange information and experience. If you would like to attend, please email me! The next one is expected to take place in early 2005.

Due to my contacts with patients, and my knowledge of GBS at grassroots level, I was also asked to speak to the hospital personnel at the intensive ward of Holstebro Hospital, Denmark, on the subject. Holstebro Hospital receives a large number of GBS patients, and has an amazingly professional treatment strategy in place - while simultaneously managing to preserve 'the human touch'. I was honoured to meet with them and hear their experiences, and it is my hope that other hospitals and GPs will follow their example.

This website is renowned as a source of non-specific information on GBS and its subtypes (CIDP, MFS, AMAN, MMN, ..). Constant updates and consistently high quality have established it as the largest Nordic source of GBS information. New features are constantly added to improve it. These include a chat room, to give GBS patients, their families and health providers a way of exchanging information and support wherever they may be in the world. A newsletter came next, and is being sent to subscribers all over the world. Next on the wish-list is a forum but with no funding, donations are required. Please consider making a donation!

Unfortunately, there are still many patients who don't find their way to the website, either because their health providers don't think to mention the existence of the website, or because the patient does not dare to ask for more information out of fear of being labelled demanding. A brochure has been designed, approved and distributed to all the hospitals in Denmark, where it is available to patients, their families and healthcare professionals.
The brochure is designed to increase awareness and knowledge of GBS, to supplement the role of health providers in supplying their patients with nonspecific information on the syndrome. It also spreads the word about the support network.

Phew! It's a good thing I had no idea I'd be involved in all this when I began, and looking back, I wonder how I found time for all this in my already busy schedule!

Would you like to help?
You probably remember the gripping anxiety and fear when you or your family member fell ill and was diagnosed with this rare syndrome. By increasing awareness and the availability of information, we can make it easier for others in the same situation today.

Ex-patients and their families talking about the syndrome with friends, neighbours, GPs, local newspapers, local radio etc. increases community awareness of the syndrome. We need to increase awareness in order to increase research funding, to find a cure to this rare disorder.

Your case history and experiences, however mundane they may seem, may be a source of great information and comfort to patients and health professionals elsewhere. Please share them here!

Finally - if you have found any information here that has helped you, please consider a financial token of appreciation. I receive no funding at all, and a donation will increase the level of support I can offer. A forum is on the wish-list, and would be of immense support to patients, providing support across borders.

© Copyright 2001-2007 S. Marcussen. All rights reserved.
Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk